Today has been an experience to say the least. Whilst rushing around this morning attempting to persuade my non-cooperative arm into a jumper, I noticed I had a tweet from my local BBC radio station. I stood, gaping, one behaving arm in its sleeve, the other flailing through the air with a mind of its own. I’m not sure what I felt more, excited or nervous that I would ramble on faster than listeners could keep up with. Noticing this tweet a whole 40 mins beforehand wasn’t much prep time, but it wasn’t an opportunity I was going to turn down. As I discovered after a quick pre-interview chat, the show had decided to get in touch after reading my Cosmo article. The topic Disabled Dating, is one that many of you may be aware from my previous blog posts that I feel passionately about.
It was fantastic to have the opportunity to discuss the stigma too often experienced because of disability. Whilst some people are absolutely fantastic, I’ve thrown my drink down my date before because I foolishly held it in my arm that spasmed; thankfully he laughed it off, others can be very closeminded and unwilling to consider the prospect of dating a disabled person. It was interesting to listen to George Dowell who was also on the segment and featured recently on The Undateables. Now don’t get me wrong, I haven’t changed my mind on the show. However it was thought-provoking listening to his experience.
Today’s blog post shall be brief as I have been up to London for my Neurology appointment and am now very tired. My Neurologist was quiet apologetic and concerned that the last lot of injections had not worked, which left me with my normal extreme spasms. Apparently this sometimes does just happen for whatever reason, but to be on the safe side in the hope that this will work better, he upped the amount he was injecting everywhere. This has reassured me and helped to quell my fears that this batch of my injections may not work. I am now feeling decidedly more positive about it.
He confirmed the Hand Therapy’s diagnosis that the Dystonia is in my hand as well. However my symptoms in my hand are nowhere near as severe as the symptoms in my neck, jaw and eyes which is very positive. He stressed it was important not to aggravate it, I’m guessing this means I really need to learn how to walk without tripping over my own two feet…or my walking stick! This once again throws my Midwifery dreams out the window. I’m starting to realise that until a Neurologist hands me a pill and says this will cure you that I need to find a new dream. Now that’s not to say that I’m giving up on it, it’s more like putting it to bed for a long sleep until/if it becomes a realistic option again. I left university in the summer of 2012 on health grounds and for the last two and a half years I have built my Midwifery hopes and dreams up only to have them go up in flames around me more times than I can count. For my sanity I need to take a break from the emotional rollercoaster ride that that dream has taken me on. My year of training was the best experience of my life and I treasure it and for now that will do.
My reflexology career has now also been put on hold due to the hand Dystonia. Whilst my neurologist said he didn’t mind me doing the odd bit of Reflexology work, I have to be careful not to overdo it. I have always loved reading and writing. I can get lost in books for hours on end and will happily write all day. There are plenty of degrees out there in Creative Writing and Publishing, perhaps I shall discover a new dream down that road. For now though I must put my love of reading into action and brush up on information on another genetic condition I have been diagnosed with. I’ll fill you in on this new diagnosis next time.
Last Friday I attended an outpatient Hand Therapy appointment. I thought this would be a simple check up on how my finger is healing, splint it back up and send me on my way home. What I forgot to factor in is that with my body being rather dysfunctional that would all be a bit too simple! I saw a lovely woman who after assessing my hand decided that my previous diagnosis of Mallet Finger was incorrect and the Dystonia is in-fact in my whole left hand. After questioning and examining my hand for a while she came to the conclusion to that the Hand Dystonia was pre-existing and was most likely covered up by the Neurological Lyme Spasms I had been experiencing previously in my hands.
I was rather thankful that I did not go alone to the hospital appointment as the diagnosis came as a bit of a blow. Being accompanied to appointments no matter what your age is something I think is rather important. An appointment may seem like a routine check up but you never know what conversation you will have to have and support is vital. Sometimes just having someone else to listen to the conversation so they can make a note of anything you miss is a huge help. For me having someone I trust listen to me panic afterwards and help calm me was exactly what I needed. Being a Reflexologist, obviously using my hands is vital, however the hospital have advised me to be on hand rest till the end of February when they will assess the splint need again, I will have been on hand rest for almost 3 months by then.
Thankfully in the meantime I am seeing my lovely Neurologist at the end of this month for my Botox injections and to get his opinion on my hand. I am on countdown to seeing my neuro as my Botox last month did not take and I have been in agony since. My GP yesterday gave me some new muscle relaxants to try so im keeping my fingers crossed that these will offer me some relief until then.
For just over two years now I have had regular Botox injections to help control my Dystonia. It started off being every twelve weeks but we soon established that I need it more often than that. By the five to six-week post injection mark the spasms would be back. If I was lucky they would be minor spasms, if I was unlucky I would experience jaw tremors that were slowly loosening my teeth and extreme spasms that would dislocate my jaw. Thankfully my wonderful neurologist was willing to bend the rules a bit and has since been administering the injections every six weeks, which has worked well.
However as I am sat here typing this I am debating taking another Tramadol to help me deal with the pain of my jaw spasm. Normally when I reach this point I have a week at the most to go before my next injection is due. The knowledge that the pain will soon be but a distant memory is comforting. Today things are different. Its been only three weeks since my last round of my injections, and because I wanted to see if I would be able to last longer in-between injections my neurologist agreed on doing them at week 7. That’s another 4 weeks. I have spent the day wondering what’s changed. I know that becoming resistant to the Botox is a risk due to how often I have it, however my neurologist assured me that as I cope on a lower dosage that this risk was minimal. Now I know there is always going to be somebody who has a side effect no matter how small the risk, but if this was the case I would expect my neck or my blinking to be starting to spasm too, as I also have these areas injected as well.
I briefly entertained the idea that perhaps he hit the wrong muscle this time after all no Doctor, no matter how good is perfect. I struggle to believe this though. If I cast my mind back over the last few months I am aware that I have spasmed earlier than usual on several occasions, admittedly however never this early. A glance at my symptom diary confirms this. A part of me wonders if perhaps I just need the dose upping in my jaw. I have much higher doses to my neck, but still with enough room to allow more to be injected to the jaw muscles.
I have taken a Procyclidine tablet in the hope that this will take the edge of the spasm. Between Procyclidine, Volterol, Tramadol and if needs be Diazepam I am hoping to be able to control the spasms and pain levels. The idea of spending the next four weeks like this puts fear in me. I cope better with the majority of the rest of my symptoms, Jaw spasms I struggle with. Everything from a sip of water or eating soup, to talking can aggravate it when its bad. Diazepam is always my last resort. Even on a small dose I struggle to stay awake.
When discussing my worries with my mother earlier she pointed out that perhaps this is just a blip. Blips have occurred before, though normally this is because I have caught a cold or some other bug causing my body to go into meltdown mode. Right now I would welcome a bug, anything to explain the spasm and take away the anxiety of another four weeks of pain.
I am reluctant to give in to the pain and medicate myself anymore right now, as I know this could be just the tip of the iceberg and if it is I want to feel like the medicine has made a definitive difference. If I give in early and take them every four to six hours then when I reach the bad stage it won’t feel like they are making a lot of difference. In the meantime my medicine of choice shall be curling up and watching Jack Whitehall and Russell Howard. Nothing like some comedy to lift the spirits!
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